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ulcerative colitis

That’s right. I’ve officially been ileostomy-free for three whole months. To be honest, it feels great to say that, but it also hasn’t been the easiest recovery in the world. In fact, I’d say it’s been the hardest of my three surgeries. Let me explain…

The hospital stay

Waking up without an ileostomy was extremely odd. I remember, leading up to the day of surgery, I was pretty sure when the time came post-operation to lift my shirt, see my stomach-sans-stoma and bawl my eyes out.

Well, I didn’t cry.

Don’t get me wrong, it was an intense moment. But, between the nausea (for some reason, I get really nauseous soon after I wake up from anesthesia, whether it’s because the surgery itself, the anesthesia itself or the pain medication), grogginess and pain I was in, my first thought wasn’t necessarily “Oh my goodness! No stoma! SWEET!” It was more like “Holy crap, it’s gone. Thank you, God. Now, what’s next?”

Well…

Managing pain.

Peeing.

Having my first bowel movement in, like, forever.

Eating.

Leaving!

(1) With the handy-dandy pain button by my side, the pain wasn’t terrible, although, as I mentioned before, the nausea seemed to get worse when I would press it, so I tried to be conservative with it.

(2) Let’s not talk about that. I peed, yes… eventually.

(3) This was a biggie. If it all came out OK, that meant there were no major complications with the surgery. And, thankfully, on the first or second day, it did. I remember that moment like it was yesterday. “Whoa…” I said aloud. It was like, in 10 months, I forgot what that felt like…

For those of you who are wondering, it feels basically the same as a regular, healthy person.

(4) Of course, right after surgery, nobody feels 100 percent, so the pain and soreness, difficulty urinating, etc. are normal. The real issues started to arise, however, when I was bumped up to a full liquid diet.

You see, my third surgery consisted of reversing my ileostomy and diverting the plumbing, for lack of a better term, down to my pouch for the new system to officially take over. So, when they closed up my ostomy, it was swollen and narrow for several days after surgery. And a swollen, narrow piece of intestine + food = not good.

Gas and liquids would get lodged in that particular area and cause pain, discomfort, nausea and, eventually, vomiting.

Long, gross, painful story short, it took about a week for the gas pains and nausea to alleviate. By then, I was walking regularly, rarely pressing the pain button and able to tolerate a full liquid diet.

The exodus.

The exodus, w/ mother dearest.

Stomach-sans-stoma, No. 1.

Stomach-sans-stoma, No. 2.

(5) Then, it was time to be discharged–perhaps for the final time.

So many emotions swirled through my head at that moment. I was thankful for my surgeon, the other attending and resident doctors and nurses, but I was ecstatic to go home and sleep in my own bed. I also felt relieved that, after years of dealing with this disease, I could see the light at the end of the tunnel. I couldn’t help but feel, however, like I was leaving a portion of myself and my history there.

Staying at the hospital certainly isn’t an ideal experience–I know that–but the people you encounter and the care they put forth is like no other. I would almost, dare I say it, miss it.

Dear Intestines, I appreciate you leaving me with this special memento, but you shouldn’t have… really…

Living with an ileostomy surely has its fair share of ups and downs. Physically, you’ll likely feel better than you ever remember. Mentally and emotionally, it may be a challenge.

But not impossible. Here are some thoughts/ideas/tips/rants on managing your ostomy when in public.

The bag

I got my first surgery after freshly being dumped and about to trek into my final semester of college, so it’s safe to say my mental state was a bit disheveled.

I was excited, nervous, anxious and, quite frankly, a little lost. Looking back at the last month-and-a-half flummoxed me beyond measure. Being in my early 20s, that teenage feeling of invincibility wasn’t quite worn off yet. By the time school rolled around, however, I felt the complete opposite of invincible.

But I had a mission to accomplish: graduate college.

It seemed easy enough. Go to class, attend meetings, study, read, write, work on homework, write some more. It was the same routine I had been performing for seven semesters prior to that. It would be the first, however, with my new friend.

When I first stepped into class, I felt like I was smuggling a package of drugs under my shirt.

Can anyone see me? Can anyone see IT?

The answer was yes, they could see me. The next answer was no… well, most of the time.

The bags would dip a little below my pant line, so all it took was a little tuck under my jeans or shorts to conceal it. Bags vary in brand and type and size, but once you get used to your favorite system, it’ll stay pretty fastened and hidden. As long as it wasn’t getting full of gas or you-know-what, it should stay stay that way.

Just keep in mind you may make an “oopsy” or two.

I, for instance, walked into a computer lab one day; unbeknownst to me, I forgot to slip my bag under my sweatpants. It wasn’t blatantly obvious, but you could see a little something something dropping an inch or two below my shirt. I took a seat, looked down and noticed my blunder. Quickly, I stood up, walked briskly to the door and, thankfully, about four additional steps into the bathroom.

I walked back in the room with my bag now tucked and hidden, heart racing and face probably red as a cherry. I tried to distract my mind with casual conversation with the students next to me.

No one mentioned it. And I never made that mistake again.

People noticing the bag was one of my biggest worries. Sure, school and the various responsibilities that came with it kept me and my mind busy, but I couldn’t help being self-conscious about it.

And, no, that feeling may never go away. But you learn to deal with it. You learn to keep your mind and body busy so everything you think or say or do doesn’t revolve around your bag. It’s as much of a battle with your mind as it it with your body.

So, go ahead: read a book, write a blog post, go for a walk, spend time with family or friends, play tennis, play video games, meditate, pray, go to church, take a nap… whatever you can do to clear your mind.

Sometimes silence helps, but other times it can exacerbate angst to a whole new level.

At different times, your stoma may “spit,” as I call it, or, basically, “pass gas,” so you may be worried about people hearing your stoma as much as seeing your bag. The sounds could range from a short and soft crackle to a long and deep squawk.

I quite vividly remember my first week in class–AKA syllabus week. It was full of zombified students staring at yet another packet of instructions, guidelines, schedules and grading procedures. Suffice to say, it was pretty quiet, aside from the professors speaking.

I would start hearing the soft groans of my stomach, hoping my ostomy wouldn’t make a peep. With that nervousness came fidgeting and even a little sweating. I had to leave the room once or twice to collect myself. They were some of the most uncomfortable moments of my life, besides, say, when I’m in the hospital.

We’ve all passed gas once or twice in school before, or at least felt the need to… embarrassing, wasn’t it? Well, try not having the ability to hold it in.

With a deep breath and maybe a short prayer, I would try and focus on what I should’ve been focused on all along: that long, boring, tedious syllabus.

There are ways to avoid that moment, however.

By knowing your body, understanding what makes it digest faster or slower and what produces more gas or less gas, you can become confident that you won’t have any of those embarrassing moments. It’ll take some time, but, in the end, it’ll become so routine you may end up forgetting you even have a bag.

Take me, for example.

My system seems to be quick in the morning, much slower in the afternoon, but then pick up again in the evening and overnight. It’ll take some trial-and-error with the type of bags, too, emptying and changing them, but you’ll gain a sense of when you should head over to the bathroom.

When all else fails, if you start feeling a slight pull, like a light weight is hanging on your stomach, or you look down and see what looks like a small water balloon under your shirt, there’s another green light for a bathroom trip.

If it is actually a water balloon, feel free to slip it out from under your shirt and chuck it at someone. If it’s not a water balloon, please don’t throw–you know what? I’ll stop there.

Your “output,” as the docs call it, can also be affected by the way you eat.

Most likely, a nutritionist will visit you at the doctor’s office or hospital to give you a guide of what you can and cannot eat, how you should eat and when you should eat it.

Foods in the list (1) below can thicken stool and decrease gas:

Rice

Pasta

Applesauce

Bananas

Potatoes

(White) Bread

Marshmallows

Peanut butter

Also, waiting to drink until AFTER you’ve finished a meal can help accomplish this.

Foods in the list (2) below can loosen stool and increase gas:

Dairy

Greasy/Fried foods

Spicy foods

Chocolate

Raw fruits/vegetables

Some fruit juices

Carbonated beverages

Alcoholic beverages

These, I’d say, are things to avoid if you plan on going out somewhere–especially if that somewhere is somewhere very quiet, like an office at work.

If you believe you may have a blockage (no [or very watery] output for several hours, sudden pain and swelling near your stoma and nausea), see this list (4) of tricks you can try to get things moving again:

Try foods in list No. 2 that make your stool more watery/gassy

Massage around your stoma

Loosen the opening of your appliance if it may be blocking circulation

Lie on your back and lift your knees up to your chest (remain in that position)

Do NOT take a laxative

If symptoms worsen, CALL YOUR DOCTOR or GO TO THE HOSPITAL

To avoid this, stay away from foods on list No. 3 and chew all foods very well!

On December 19, 2014, I visited Penn State’s Hershey Medical Center with the intention of making 100 percent sure surgery was the correct answer.

Less than an hour into the appointment, I had spoken to the nurse, gastroenterologist and surgeon about my symptoms, failed medications, the surgery’s process and timetable and whether I would definitely need it or not. I figured that would be it. And then I would leave. Just like any other ordinary doctor’s appointment.

But this didn’t turn out to be an ordinary doctor’s visit.

It turned into a five-day hospital stay.

The nurse, GI and surgeon all seemed a bit worried. They said I looked pale, skinny, weak and fatigued. They not only confirmed I needed surgery, but I wasn’t even healthy enough to undergo the procedure yet.

After being admitted to the hospital and getting some tests done, they concluded I was anemic, dehydrated and malnourished.

What a difference two year makes, huh?

I had corticosteroids, antibiotics and TPN (total parenteral nutrition)—some weird looking white liquid consisting of vitamins and minerals, amino acids and lipids and all that good stuff—pumping into my veins. They put the TPN through what’s called a PICC (peripherally inserted central catheter) line—a more durable, long-lasting form of intravenous therapy that’s admittedly a heck of a lot scarier to put in than an ordinary needle.

How does it work? Well, I’d mumble off a bunch of medical jargon I found off the internet, or I could just show you this video from MacMillan Cancer Support, which I also found on the internet…

As each day passed, the doctors tried to get me one step closer to going home for Christmas Day. One big step was being able to eat enough so I wouldn’t return to the hospital for surgery in the state I originally came in.

I tried a diet of “full liquids.” Unfortunately, most of the foods they were able to give me were dairy products, such as pudding, yogurt and ice cream—which don’t pair very amicably with an inflamed colon.

So I wound up drinking a lot of Nestle’s BOOST non-dairy nutritional shakes. However, I needed to drink an obscene amount in order to receive an adequate level of nutrition.

As the countdown to Christmas continued, a plan was in the works. Slowly but surely, the plan was coming into fruition.

And then Christmas Eve came.

The best form of medicine, in my opinion, is faith.

Merry Christmas to you too… but can I please leave now?

You can always depend on mothers to make the best of any situation.

My diet was upgraded to “low residue,” meaning no nuts, popcorn, most fruits and vegetables and other fibrous, tough-to-digest foods.

So I had eggs and home fries for breakfast… and they were delicious—from what I could eat, that is.

You see, I had gotten to the point where I was almost afraid to eat. Plus, I would get full more easily, so I would pick at what I could eat without any cramps or urges, and then be satisfied.

When the doctors would come in, they had a look of disappointment, asking if that’s all I was able to eat.

So the plan went through its final tweak: I would go home (yay!) for a few days to spend Christmas with my family; to avoid worsening symptoms, I would stay on a low-residue diet; and, to avoid worsening hydration and nutrition over that span, I would go home with the PICC still inside me so I could administer the TPN at home. After a few days at home, I would return for my procedure: a total colectomy.

On December 24, 2014, I returned from my ordinary, run-of-the-mill, five-day gastroenterologist appointment.

Dear intestines, I am bidding you farewell as I gallivant around the globe with my magical new friend; let me introduce you–hey, what’s that face for?

With mesalamine in my rear-view mirror, the next step was finding a medicine I preferably wouldn’t end up in the hospital because of. In between that time, however, I was introduced to quite the polarizing drug: prednisone.

And it worked beautifully.

Following my hospital stay, I hadn’t felt better ever since my colitis symptoms started. There was no blood. No cramping. No urgency. It was pure bliss. The pills tasted atrocious. But after some water? Pure bliss.

Yeah… about that.

You see, as I quickly found out, prednisone is one of those “too-good-to-be-true” drugs: a corticosteroid. Does it work? Heck yes. But there’s a catch. A few, actually. For me, I started breaking out and growing hair in all sorts of places–it was like going through a second surge of puberty. Later on, I would develop harsh acid reflux because of the drug eating away at the lining of my stomach.

It works your body hard. Too hard. Sure, I worked out and grew some muscle, but it slowly deteriorates your body after a while of taking it.

For this reason, everyone requires a taper, and I was no exception. From six pills per day to five pills I went, then to four, then to three, two, one, one-half, then zero. Right around two, however, two things would happen: my irritability sprouted like a Redwood and, sadly, my symptoms would return.

I didn’t believe I would develop this irritability. ‘That’s not going to happen to me,’ I thought. Well, believe it or not, it did. I would feel more anxious, grow impatient quicker and not be the biggest bundle of joy to be around for the next couple weeks as I finished tapering. I didn’t notice it at first, and my family and friends saying I seemed different made it even worse. Maybe this is what Stan Lee was experiencing when he created The Incredible Hulk.

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So, what then? I couldn’t continue on prednisone for the rest of my life, so I was introduced to another medicine, called Imuran (azathioprine).

While prednisone is classified as a corticosteroid, Imuran is an immunosuppressant. In other words, it acts by shutting down one part of your body—the immune system—in order to heal another part of the body. It is an oral form of chemotherapy. It destroys in order to protect.

Eek. I know. Let’s take a step back, however. The reason it does this is because ulcerative colitis, as well as being an inflammatory bowel disease, is an autoimmune disease. This means the immune system goes haywire and attacks itself. Eek. I know.

They said the new medicine would take several weeks to kick in, so I was put on another lovely prednisone taper while I waited.

Dear intestines, this has all been one very funny joke, but I’d appreciate if you’d stop now.

I have a correction: they weren’t my sheets; they were my girlfriend’s.

For the first time, another person, aside from a doctor, had witnessed my disease firsthand. It was embarrassing, to say the least.

Thankfully, we had been dating for around two years before this happened, so we were pretty comfortable with each other, our faults and imperfections. I would be able to talk about it—without going into too much detail, of course—and open up to her.

I think having someone, whether it’s a significant other, family member or good friend, to talk about your inflammatory bowel disease with is one key aspect on the road to recovery. Not many people will understand, but having at least one person helps, for sure. And, hey, if they don’t mind talking about your bloody diarrhea, well, they just might be a keeper!

On the same token, ulcerative colitis was still very foreign to me at this point, so, really, I couldn’t say too much about it. Both she and I still had much to learn.

Indeed, it was just the beginning.

So, my next step was to schedule another appointment with my GI, while hers was to, well, wash those sheets.

At my appointment, I was prescribed more mesalamine, this time in an oral form and an enema. This meant still administering nighty; however, it was in liquid form (think nasal spray), as well as swallowing four horse pills every morning.

That night, I awkwardly sprawled on the bathroom floor and completed my first dose of the enema. The next morning, I took my first dose of the pills.

A few hours later, I was in the emergency room.

I was experiencing intense stomach pains that I originally thought resting would assuage. After some prodding by that very same girlfriend to seek out medical help, she drove me to the emergency room to get checked out.

There, my symptoms got worse, and more symptoms came. I was in the most pain than, to this day, I have ever experienced and some pretty gross things were happening on both ends of my body, at the same time… in the middle of the hallway…

“I’m sorry,” I kept repeating. I truly meant it, but I couldn’t control what my body was experiencing. While writhing in pain, I got pricked for a blood test. The nurse missed the first time and blood started seeping from my arm. I didn’t care, to be honest. I was delirious.

I remember my girlfriend with tears in her eyes and my mother also doing her best to remain calm—while calming me down in the process.

Mothers are good like that. Mine is, at least. We hadn’t necessarily been getting along the best, but when family needs family, they’re always there for you. I remember her voice comforting me, her hand gripping my hand and the peace she brought in that intense moment. A mother’s love is unrelenting and unconditional, and that surely comes in handy during these moments. Again, sometimes, it’s just nice to know someone cares.

The morpheme would keep my pain at bay for a brief moment. During one of those lulls, I remember my doctor explaining I had pancreatitis, likely from the new medicines I was taking. Like ulcerative colitis, I wasn’t exactly sure what it was, but, supposedly, it’s pretty serious.

A few days later, I was watching TV and one of those awful medicine ads came on. On the long list of possible side effects of this particular medicine was pancreatitis, “which could be fatal,” according to the commercial. My jaw dropped out of place and my eyes bulged from their sockets as I thought, “Holy crap…”

Thankfully, I survived that night, plus another one or two after being admitted into the hospital. Once I was home, I happily kissed mesalamine goodbye forever.

There’s nothing glamorous about finding blood in your stool, that’s for sure. It could be from anything as minor as a cut or as serious as rectal cancer. However, whatever it’s cause, it’s never quite comforting to see–especially at first.

When I first saw it, I was hoping it was the former rather than the latter. Nevertheless, it was the first sure sign of something wrong. On top of that, I kept on feeling the urge to go, but, once I ran from class to the bathroom, nothing happened.

After letting this go on for months, I started losing my appetite, losing weight and losing energy. So, finally, I gave in, saw a doctor and let her shove some sort of doohickey up my behind.

The doohickey told her it was hemorrhoids. That explained the bleeding, sure, but why the urge to go so often, and to no avail?

I never got a clear answer, but we discussed certain anxieties of mine and, well, going to the bathroom in public was one of them. She told me how living in her dorm made her constipated for that same reason.

I settled with that answer. Partially because it made sense. Partially because it merely was an answer.

So, I swallowed my pride, walked through the aisles of my local grocery store, put my tail between my legs and picked up a tube of Preparation H. I administered that every day, thinking it would be the magical remedy I was hoping for.

But, boy, was I wrong.

The bleeding continued, the cramping got worse and the urges still pestered me throughout the day.

And it was starting to get old.

It not only affected my body, but my mind as well. I would lose focus, concentration and, to an extent, determination.

My mind would cloud with self-conscious thoughts about my stomach growling; I would cough or sniff or shuffle in my seat to try and mask the sound when it decided to break its silence. I would worry more about running to the bathroom than the test I was taking in front of me. It was draining me physically and mentally.

It’s fair to say the next step was to go to a specialist: a gastroenterologist (GI).

Unfortunately, he had another medical doohickey to see what was wrong down there; Fortunately, I wasn’t awake for that one. Now, before that previous sentence can be misconstrued one way or another, I’ll say I had a colonoscopy.

After I woke up from the procedure—yes, that’s what it’s officially labeled—my GI told me had proctitis, a limited form of ulcerative colitis inflaming the lining of the rectum.

I was given mesalamine, the generic name for medicines intended to treat inflammation. It comes in an oral form, suppository and enema—the latter two being administered rectally.

At first, I was given a suppository. As you could imagine, it wasn’t too enjoyable inserting it in every night, but it stayed inside as it melted and soothed the inflamed spots as I slept. I noticed a difference in the beginning, with less blood and less cramping.

With any form of ulcerative colitis–or any inflammatory bowel disease, for that matter–getting comfortable with that particular area of your body (IT’S YOUR BUTT, JUST SAY IT! Repeat after me… “Butt”) is an integral first step of coming to grips with your newly diagnosed condition. It might be embarrassing; it might be dirty and smelly; but it’s all necessary to live with, treat and hopefully relinquish this disease once and for all… but, most importantly, it’ll all be OK (Repeat after me… “It’ll all be OK”).

Not after long, however, I would start to wake up with some leakage soaked through my sheets. I figured it was a fluke—until it happened again.